When an uncertain time led us to make a change in our son’s hemophilia care
I remain grateful to all the people who helped us find a way forward for Caeleb
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My son Caeleb faced some of the most challenging periods of his life at the same time the hemophilia treatment center (HTC) we used was looking for a replacement hematologist who specialized in bleeding disorders.
He was 8 and had begun having target joint bleeds, and a high-titer inhibitor prevented his clotting agent from working. He had switched to a bypassing agent that worked, but it took three times as long for a solid clot to form. My wife, Cazandra, and I later learned that Caeleb was also allergic to the medication he needed. These complications led to repeated, lengthy hospitalizations.
During this time, Caeleb saw at least five different hematologists rather than one doctor who specialized in bleeding disorders, further complicating his care. Each physician took a different approach toward treating him.
As his father, I wanted to protect my youngest son, but I could not spare him the bleeding and lengthy hospital stays. I appreciated the people who cared for him, even as I struggled with how little he seemed to be improving. Cazandra and I wanted our boy to have a chance to heal.
A different approach
Faced with these difficulties, Cazandra and I decided that we needed another opinion, and made an appointment for Caeleb to be seen at the University of Colorado Hemophilia and Thrombosis Treatment Center. The hematologist there soon began working closely with one of the doctors in Albuquerque, New Mexico, who had seen Caeleb in the hospital, and together they developed a road map for Caeleb’s health. That collaboration proved successful, and our son began to recover quickly.
Caeleb has not had a joint bleed since 2014 — a change Cazandra and I can hardly believe. Two doctors in two different states worked through the challenges of an interim period to find the best way to address our son’s health difficulties. Caeleb improved because we looked for a different way to tackle a difficult situation.
Today, Shirley Abraham, MD, one of the hematologists we saw during Caeleb’s hospitalizations, leads the Ted R. Montoya HTC in Albuquerque. Her knowledge and compassion continue to have a positive impact on our community. Caeleb, now 20, still makes a point of saying hello whenever he passes her office. He, like many others, adores her.
Looking back, I am grateful to the people who helped us find a way forward for Caeleb. We sought care beyond the familiar to give our boy the best chance to heal, even as we remained grateful to those who had worked to care for him through an uncertain time.
What Cazandra and I wanted then is what we still want for our sons: the best care possible and a chance to move forward with hope.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always consult your physician or another qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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